No Poster Girl: To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

I am reposting this blog entry from No Poster Girl because it is excellent and maybe it’ll reach someone who needs it and make a difference in their life.

Recently I realised that after becoming sick, I bought a Gazelle exercise glider and signed up for an extremely intense series of exercise classes at Pure Barre (I only went to one class and left in tears. It completely destroyed me. But I didn’t know what I was sick with at the time). I took to running up and down the steep stairs at work to “ward off blood clots and pulmonary embolisms” because I sat at my desk for such long hours. I thought perhaps I had ME/CFS, but didn’t know anything about it since doctors refuse to talk about it.

Come June of last year, I started meditating daily and I thought that took care of numbers 1 and 2 below… but it seems not enough. I was still active, going to the dog park, running errands, cooking ~ everything! I should have paid much more attention to #3 and I still don’t have an ME/CFS doctor (#4).

The one thing I will add for those newly diagnosed is be wary of the Hummingbird website (although it is a great source of information, it can be overwhelming and I think it really toppled me into a deep hole of fear. I’m still working on intercepting the doomsday thinking that now automatically comes to the forefront of my brain) and avoid typical medical sites that encourage exercise.

Posted on November 30, 2011 by 

I hit a nerve with my “Nothing” post about what I did (and mostly what I didn’t do) after I was diagnosed. And many of the reactions I heard from others touched on the number one, most important, know-this-if-nothing-else piece of advice I wish every doctor would give to every person diagnosed with ME/CFS.

Item #1: Stay inside your energy envelope.

Here are some of the ways that was said:

Nathalie“For me if I had known at the beginning what I had and didn’t over do it on good days I might be in a totally different place.”

Kathy D“After nearly 26 years, I still don’t know what to do except rest most of the time, pace myself very carefully, and take some vitamins.”

Debbie Anderson“If I had been told by my doctors that by pushing my limits, and burning the candle at both ends, would destroy my vascular and heart systems, I would have listened.”

Breathe Easy“I feel so strongly that if I had not tried to just push through and act as if the Dx was bogus, I would not be so bad off today.”

Falling ill with ME/CFS is a real down-the-rabbit hole experience. Suddenly, your body, which has always, up to that point, had enough energy to get you through the day, allowing you to do whatever needs doing, just – doesn’t. It’s as if you’ve always made a certain amount of money and all of a sudden you’ve taken a 50% pay cut. In order to maintain a positive balance in your bank account, you must start budgeting differently; your priorities have to change. Since you don’t have enough energy to spend on all the things you used to be able to get done, you have to start making choices.

Now, noting the need for pacing isn’t uncommon advice – but the problem is that it needs to get to the newly diagnosed quickly. People who develop ME/CFS don’t instinctively know that it’s absolutely imperative that they stay within their energy envelope. Why should they? It’s not something they’ve ever needed to do. Plus, it takes time to learn and to shift from that everything-is-normal state to the I-understand-my-limitations state. And oftentimes, it has to be done over and over again as the illness progresses.

Furthermore, our culture does not encourage healthy, well-adapted responses to illness. It rewards pushing through, and so that’s what the newly diagnosed mostly do. Even after you find out you have to stop doing it, it’s hard to turn away from. We think we have to push through; whatever needs doing is more important than giving our bodies time to rest, time to heal. But for people with ME/CFS, responding appropriately to the body’s tiredness is absolutely mandatory. If we don’t do so, we’ll get worse – at least temporarily, and sometimes permanently. Our energy allotment will go down, down, down – and we’ll have less and less energy to “spend.”

So, because of Item #1, Item #2: Rest.

If you suddenly find yourself inexplicably much more tired than you used to be, the way to stay within your energy envelope is to do less and rest more. And resting doesn’t require you to know for sure what is causing your tiredness – you don’t need a conclusive diagnosis in hand. You also don’t need blood tests, a prescription, to spend cash, or to buy equipment in order to do it.

Maybe that, too, sounds obvious – if you’re tired, you should rest, right? But the amount of rest needed in ME/CFS is a whole new ball game for most people. You have to make a real commitment to resting.

Because I’m talking serious rest. Enforced rest. Give yourself permission to rest. For several months at least, to see if it helps. Clear your schedule. Take FMLA. Quit your job. Shed responsibilities. Reduce the amount of stress in your life. Move in with family if you have them and you can. I know none of this is realistic – upending your life just to lie around and do nothing, and potentially drastically reduce your income? Sure, dealing with upending your life for months, maybe a year, is difficult, but dealing with upending your life permanently is worse.

It is a terrible injustice that this illness receives such a paltry amount of funding, and that because of that, there are not better treatments than simply respecting the limits created by the disease. But until we have those better treatments, resting first, and not when the disease forces you to, is what will give you the best chance at recovery.

Item #3: Where you are now is not necessarily where you are going to be.

When I fell ill, there was much less information on the web about ME/CFS than there is now. The two major things that I remember running across were Jodi Bassett’s A Hummingbird’s Guide to ME and Laura Hillenbrand’s essay “A Sudden Illness”, the latter of which was only a couple years old at that point. Reading “A Sudden Illness” was incredibly frightening. Hillenbrand described such awful events, and such terrible incapacity. I couldn’t imagine how she could endure it, and I was grateful that my case of CFS was not as severe as hers.

Well, it wasn’t then, but it eventually was – and even worse than what she describes, too. This illness is variable and changeable. Some people – the very lucky ones – get sick, are sick for a while, and get better or mostly better with minor limitations. Some people get sick to a degree, and pretty much stay at that level of illness from then on. Some people oscillate, getting worse and then better and then worse again. Some people get sick, then sicker, then even more sick.

So I would counsel the newly diagnosed to realize that a lot of things can happen – just because you’re not very sick now doesn’t mean you can’t possibly get worse, or just because you are very sick now doesn’t mean that’ll you’ll never improve. And a major part of the way not to end up very sick is – you guessed it, back to Item #2: Rest.

Item #4: You need a doctor with at least some ME/CFS expertise.

I didn’t think I needed an ME/CFS doctor, and I didn’t know how to find one, and when I did learn how to find one, they were all so far away that I didn’t think it was worth traveling to see one. And if I had had such a doctor, I might have been told Item #1 and Item #2, at a time when it could have done me more good than when I finally figured it out myself, and I might have heard about and started treatment sooner, and I might be in a better spot now.

Because I didn’t have an ME/CFS doctor in the early years of my illness, I was managed by my GP in a hands-off way. She didn’t know anything about treatment, or anything about ME/CFS specialists. And that’s not at all uncommon. ME/CFS is poorly understood by most medical practitioners. Don’t be a guinea pig, someone who is managed without knowledge, or someone who sticks with a doctor who tells you that you must be depressed, that you just need to exercise, or that your illness is all in your head because all the tests are negative.

An ME/CFS doctor who has seen a lot of the illness before you show up in his or her office will know the pitfalls that come along with not knowing what you’re doing in terms of dealing with this illness, and you’ll give yourself the best chance for a good outcome by being under the care of someone who can guide you along the way. You don’t necessarily need to go to one of the few super-specialists who only treat ME/CFS, but you at least need someone who “believes in” and is familiar with the illness. But I would say that if you can get to a super-specialist, do. (You can find ME/CFS doctors and specialists at the ME/CFS Wiki here.)

So those are my suggestions – the things I most wish someone had told me early on. And my story is the same as those quoted above. I did each one of these things wrong in turn.

  • I was a bit of a workaholic, and I had always gotten better after I’d gotten sick, so I didn’t think there was anything wrong with continuing to push myself, even though I was ill.
  • I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day.
  • I thought my case was a mild one, so I didn’t treat it with the gravity it deserved. Well, I only had a mild case until I had a moderate case, and then a severe case, then a very severe case.
  • I didn’t have a doctor who knew anything about ME/CFS, and I had never met anyone else who had it, so nobody told me how vitally important it was for me to rest and stay within my energy envelope.

I, and many other ME/CFS patients, have had to learn all of these – and many other things about our illness – the hard way. It shouldn’t be that way. It’s not as if our illness is uncommon, and it’s not as if it’s unpredictable. Until we know how to prevent and how to actually cure it, having good information, starting from go, is the key to allowing patients to have the best chance at recovery.

Now for those of you who have ME/CFS, what do you wish you’d heard when you first fell ill, or what were you told that was most – or least – helpful?


2 thoughts on “No Poster Girl: To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

  1. Curiosity says:

    Thanks for sharing this. It’s excellent, and I heartily agree with every word.

    I signed up for a yoga class and a ballet class when I was severely ill but didn’t know with what yet. Heh. And I used to intentionally park really, really far away from stores to take advantage of the extra walking. Sigh. Similar to you, I only made it to a couple of those classes before having to give up, frustrated and demoralized.


  2. E. Milo says:

    It’s such a criminally repetitive story, isn’t it? I didn’t mention it, but I actually signed up for THREE yoga series through different Groupon-type offers, the most recent expiring a few months ago. I just keep thinking I’m going to be better. What a waste of money. What a sad delusion.


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